Epilepsies Action Network advisors are still reading their way through this 4,000 page document. But a few key highlights follow:
HHS Chronic Disease Prevention and Health Promotion Epilepsy line is $11.5M. This is a $1M increase over the FY 22 level. There had been $1M increases in FY 20 and 21, but the program was flat funded in FY 22 so it is very exciting to see the increases start again. Epilepsy Foundation has been a big proponent and helped rally the broader community.
VA Epilepsy Centers of Excellence didn’t get a specific increase even though the President and House version of the budget both included a $9M recommended increase—BUT, the epilepsy centers had gotten a $4M increase from FY 21 to FY 22 while other neuro centers of excellence didn’t. Epilepsy Foundation, AAN and other neuro groups are working on a strategy for an increase in FY24.
The Defense Research line for Epilepsy (CDMRP) is flat at $12M.
The line item that houses the CDC-NIH registry that allows states to track infant/young deaths including SUDEP-related registry got about a $25M increase; this money isn’t ALL for the registry, the line items funds a lot of activities—but an increase is still good.
Undiagnosed Disease Network got $18M in funding - recognizing the bipartisan support for this initiative.
Medicaid/Public Health Emergency: Congress de-coupled pandemic Medicaid protections from the HHS-declared Public Health Emergency (PHE). Regardless of how long the PHE lasts, people may lose Medicaid coverage as soon as April 1, depending on how long states take to process re-determinations. Looking ahead the epilepsy community and especially those living with rare, complex epilepsies will need to message this out early next year—reminding people to make sure their contact info with their state Medicaid agencies is accurate, actually read the mail from their state Medicaid agency, etc. This is an Epilepsy Foundation priority - stay tuned for messaging and strategy. .
Good news - Medicare telehealth flexibilities are extended through the end of 2024 and high deductible plans can continue to support telehealth appointments before people meet their deductible.
ARPA-H received $1.5B in funding for a new agency, strategy, and talent with an "entrepreneurial culture" to advance biomedical research and the create breakthrough health technologies.
Appreciation to Laura Weidner, Epilepsy Foundation, Vice President Government Relations & Advocacy and Liz Powell, Esq, MPH, Founder, G2G Consulting for these insights.